psp matters autumn

Issue number 52

Autumn 2011PSP Matters

HealthUnlocked • Palliative Care • In the Spotlight

www.pspeur.org

We need your views

Please complete our survey.

See page 11

Alzh

eim

er’s

Rese

arch

UK

02 PSP Matters Autumn 2011

Contents

4. News Update Including new Support Groups in Essex

and Cambridge

6. Holidays A carer’s experience plus tips for holidays

8. Palliative Care Advice on palliative care, hospices and

planning ahead

12. Personal Experiences A patient and a carer share their

experiences on coping with CBD

15. Benefits How a PD Information Support Worker

helped someone claim life enhancing benefits

16. Research – In the Spotlight We focus on Dr Selina Wray and her

involvement with PSP research

18. Research - Updates How new genes that can increase the

risk of people developing PSP have been identified and an update on the Davunetide clinical trial

21. Letters A selection of your correspondence and

information

22. Fundraising A family’s decision to ride from Tower to

Tower in aid of PSP; an update on ‘3 for PSP’ and much more

26. Your Events An update on events our supporters

have organised or taken part in

29. Upcoming Events Read about the exciting and creative

fundraising events you could take part in

30. Support Groups A list of support groups taking place

around the country.

7

12

8

6

4

23 28

16

PSP Matters Autumn 2011 03

It’s been a busy summer at the PSP Association, with a number of new initiatives either in place or in the pipeline. We put people who are affected by PSP at the heart of everything we do. This is why we relaxed the membership rules earlier in the year and are now introducing more and more ways in which members can benefit - not only from the services we provide and (in due course) from the research we fund, but also from sharing their experiences with each other.

For this reason, we launched Health Unlocked – a new social networking site that is already proving a great success. Read more about it on page 5.

We are also trialling a new model of volunteer-run support groups where the members themselves decide how they wish the group to develop. Pilot projects in Essex, Northampton and Cambridge are up and running, with more to come in Leeds/Bradford, Medway, High Wycombe, East Sussex and Southampton. We hope to roll out the programme across the country. Read more on page 4.

During the coming months, we will be consulting widely with members as we develop a ‘Pathway of Care for People with PSP’. This will help everyone to have a clearer understanding of life with PSP and what support they can expect. Developing this pathway will also help us identify key areas of need and design services accordingly.

We are launching a £1m Research Development Fund. Our 2010 Research Strategy identified broad research targets and we now intend to work with the research community to pinpoint specific research questions – input or suggestions from readers would be welcomed.

Sadly, we have some goodbyes to say. In July, the Development Officer (DO) network was disbanded. Our six officers have carried out sterling work in raising awareness of PSP in the medical and allied professions - we thank them for all they have done and wish them well for the future.

We also say farewell to John Chandler, who has retired after six and a half years with the Association. At one time or other, John was our Director of Care and Support, he looked after our overseas relationships, took charge of our advocacy efforts in this country and even stood in as CEO for part of last year. He has made a tremendous contribution and we are truly grateful. We hope John has a long and happy retirement.

PSP MattersExecutive Editor:Fergus Logan

Editor and Advertising Enquiries:Rebecca Benney 01327 322416 [email protected]

Design and Print:BSP and Newnorth Print Ltd, Bedford

Cover Picture: Selina Wray, one of many young researchers working in neurology who has been involved with PSP research.

The PSP AssociationPSP House, 167 Watling Street West,Towcester, Northamptonshire, NN12 6BX

T: 01327 322410F: 01327 322412www.pspeur.org

The views expressed in PSP Matters, which is published three times a year, are not necessarily those of the PSP Association and therefore products and services advertised or promoted should not be taken as recommendations by the Association, who cannot be held responsible should any complaint arise.

PSP Matters is available as a pdf and can be downloaded from the website

Online Forum & HealthUnlockedThe PSP Association’s online forum (http://forum.pspeur.org/) and PSP_HealthUnlockd (www.psp.healthunlocked.com/) provides a safe place for people affected by PSP or CBD to share experiences and support each other with the challenges of living with these diseases.

Working for a World Free of PSPFollow us on Twitter @pspassociation

The PSP Association is dedicated to the support of people with Progressive Supranuclear Palsy (PSP) and the related disease Cortico Basal Degeneration (CBD), and those who care for them. As PSP and CBD are very similar, we often use ‘PSP’ as a shorthand for both.

The PSP Association Registered Charity Numbers: England and Wales 1037087 / Scotland SC041199

Chief Executive

Fergus Logan Chief Executive


News update

Essex leads the way

People living with PSP or CBD, their families and carers in Essex and parts of east London, are being

invited to join a new support group.“This is the first of what we hope will be a much wider network of support groups and the long-term plan is that no one will live further than 25 miles from a support group,” commented Cameron Wood, Director of Development.

“It will be up to local people when and where they hold the meetings, and how they are run. We hope that by handing over control, meetings will be more frequent and meet the needs of everyone - from carers and people with PSP needing support now, or past carers who can offer this support, to family members who want to do something positive like fundraising, campaigning and helping out in whatever way they

can. Everyone is welcome to join us for a chat and a cuppa!”

Other groups around the country are being set up by volunteers in Northamptonshire, Cambridge, Leeds, Nottinghamshire, and Sheffield, and by the end of the year it is hoped to have groups in Oxford, South Bucks and

Aberdeenshire.“We would love to have

more of these groups, so if you feel you would like to volunteer to help set up and/or run a support group in your area, please get in touch.”

Please contact Deborah Wheeler on deborah.

[email protected] or 01327 322415. The Essex Support Group meets

on Saturday 24th September 2.30pm to 5.30pm at the Marillac, Eagle Way, Warley, Brentwood, Essex, CM13 3BL. Parking is available and the venue has full disabled access.

“ It will be up to local people when and where they hold the meetings...”

Royal Patron attends Carol ConcertThe PSP Association’s Carol Concert is on Wednesday 14th December at St Clements, Eastcheap, London. This year the concert will be attended by a host of dignitaries and celebrities and our patron, HRH the Duchess of Gloucester.This is always a festive evening of carols led by the talented Helios Choir with a mulled wine and mince pie reception at the Regus Offices, close to St Clements, afterwards.

Please book early to avoid disappointment. Tickets are £15 and can be reserved at [email protected] or call 01327 322410. Alternatively, for a booking form and full details, click onto www.pspeur.org

Supermarkets help PSP We have been nominated at several Waitrose branches to benefit from its ‘Community Matters’ scheme. Each store puts aside £1,000 per month to divide proportionately between 3 chosen charities – you can nominate PSP Association at your local branch by visiting the Welcome Desk.

For help, call Alan at PSP Association on 01327 322419.

Raffle WinnersThanks to everyone who took part in the Summer Prize Draw raising over £11,000 for PSPA.

1st Prize: Mr A Slater, Shetland

2nd Prize: Mr A D’Silva, London

3rd Prize: Mrs. S Henderson, Liverpool

As PSP Matters went to press we received exciting news of another new Support Group in Cambridge. This group will take place at Trumpington Village Hall at 10.30 on Saturday 1st October. It will be led by Faiza Qureshi and Ronc Wood, who have very generously agreed to set it up.

If you live within a 25 mile radius of Cambridgeshire information should have reached you. If not and you would like to attend or receive further information please call Deborah Wheeler on 01327 322415

News Flash! New Support Group in Cambridge

“Simply put, this site is an easy and personal way for people to gather and share information

securely. It brings the support group to your living room and provides a discreet place to ask questions that may have been frightening or confusing,” explained Katie Burrell, Senior Communities Manager for HealthUnlocked. “The site features a ‘Community Blog’ for users to add their own blogs, where posts can be optimistic, funny, helpful or used to let off steam but most of all we hope they will be open and honest about life with the conditions. Of course, there is also the option of adding comments to other people’s blogs.

“There is also feedback on hospital facilities from others in your area and new reviews will be continually uploaded so it’s a really useful resource.”

A ‘Questions’ section’ allows users to call on the collective experience and wisdom of the on-line community and

PSP Matters Autumn 2011 05Follow us on Twitter @pspassociation

“ It brings the support group to your living room...”

HealthUnlocked - where your words make the differenceLaunched in July, HealthUnlocked is a new website to complement our existing services and expand the level of support we offer to people affected by PSP and CBD.

there’s a ‘Poll’ for a quick way of seeing how others affected by PSP and CBD might feel about a particular topic.

Jan, caring for her mother with PSP, joined the new PSP Association group on HealthUnlocked. She posted this comment: “I won’t get as low again – I can just look through what people have written and feel comforted. I don’t feel so alone.”

“Of course, the disease is individual but there are similarities and I know that I’m better prepared for the time ahead. Now I know what to expect with the support of the

PSP nurses and others on the site, I’ve got somewhere to turn now – where people who understand will be there to listen. We can buoy each other along in the HealthUnlocked site.”

Jill, who was diagnosed with PSP last year, saw the site and was interested in blogging, even though she’d never done it before. “My speech is becoming more difficult but I can type OK. While I can, I’d like to communicate for myself.

I’m lucky that I’m still mobile and can see my friends but this site lets me ‘talk’ to others with the same problems. Although I have frustrations with PSP, the site gives me freedom to share and to learn too.

“I benefit from reading other people’s experiences – it’s not scary, it’s just sharing. And I trust the PSP Association, so I’m confident that they’re looking after me. With the nurses taking part too, I feel I can use the site for information I can trust.”HealthUnlocked is moderated by the PSP Association

PSP HealthUnlocked

•A site for patients and carers of those with PSP and CBD

•A safe space to talk, question, share and learn with others

•Share experiences & learn from others

• Information from PSP nurses & staff

•A support group that’s open all day, every day

•Free for you and free for the PSP Association

•New functions will be added soon

•Join today! Visit: www.psp.healthunlocked.com/join Jill celebrating her 65th birthday with her

cousin in February this year.Jan with her mum who has PSP


next morning along the beautiful Staffordshire and Worcestershire Canal. In all, we covered some 97 miles and navigated 74 locks (there and back) with numerous enjoyable stops to eat, both ashore and on board (thanks to Sue for doing most of the cooking!). We enjoyed some wonderful scenery and the fascinating features of this marvellous canal were made even more pleasurable by the excellent equipment and facilities of our boat and Babs gave the trip a firm ‘thumbs up’.

Would we do it again? Yes, for sure!

It’s June and along with our son, Kevin, and his partner, Sue, we are taking a week to cruise the rivers and

canals in Worcestershire. Our narrowboat, ‘Lilia’, has been

adapted for disabled users so is perfect for my wife Barbara, (Babs to most who know her), to enjoy the slowly passing countryside from the deck, or within, yet still have all the facilities she needs for her comfort within her reach. The boat has many useful features for wheelchair users including hydraulic ramps at the front and rear of the cabin, raised steering position for ease of shore access and improved view for the wheelchair user, large bathroom/wet room with shower chair, over-bed lifting beam/ hoist and large and low level cabin windows for excellent views.

We joined our boat at Upton Marina

on the River Severn and after stowing our clothing and food (and some wine of course!) we were given a thorough briefing by the Marina staff. The hydraulic platforms are large enough for the wheelchair user and one or two carers to be raised or lowered from deck to cabin and the cabin passageway is wide enough for a standard wheel chair to pass from end to end. However, with the cabin being only just over 6 feet wide there was support within easy reach for Babs, who can still manage a few cautious steps.

The first part of our trip was a 6-hour cruise up-river, including navigating through four large locks (operated by lock keepers), to where the canal meets the river at Stourport on Severn. We moored up for the night at Stourport ready to commence our journey the

Boating with PSPRoy and Barbara Ansell hired a narrowboat for a week’s holiday. Roy welcomed us aboard…

Holidays

“ Our narrowboat, ‘Lilia’, has been adapted for disabled users so is perfect for my wife, Babs...”


Last year we managed a holiday to Egypt and stayed in a resort called El Gouna - very flat and suitable for

a wheelchair. We rented an apartment with a pool, which was perfect, as we no longer like to be in a hotel.

It was fantastically hot and relaxing, and just what both my Mum, as a full-time carer, and my Dad needed. During the day we would sit by the pool, and Dad would snooze on a sun-lounger in the shade. We would order delicious takeaways for lunch, and then shower early evening and go either to the marina or downtown for dinner.

The reason I write is so that others know that it is certainly not impossible to holiday after diagnosis. Even low cost carriers, such as EasyJet, are very good with dealing with wheelchair passengers, and Age Concern supply holiday insurance for people with illness. With us we took dad’s wheelchair and a toilet surround as the main aids for him, and we coped very well! Baby monitors helped too once dad had gone to bed

Bruce Wake Charitable TrustRoy and Barbara hired the ‘Lilia’ from the Bruce Wake Charitable Trust that also operates two other, purpose-built boats to enable disabled people, and their carers, to enjoy cruising holidays on canals and rivers.

For more information, contact the Bruce Wake Charitable Trust, on PO Box 9335, Oakham, Rutland, LE15 0ET or telephone 0844 879 3349 or visit www.brucewaketrust.co.uk

Roy’s top boating tips…• Handling of the narrowboat is easily

mastered with a little instruction from the staff at Upton Marina and most people find it very enjoyable, but should you prefer, it is also possible to arrange a ‘skipper’ for all or part of the week (although this is at extra cost, of course).

• The river locks on the Severn are all operated for you by the lock keepers. But on the canal, the locks are ‘un-manned’ and it helps to have a relatively fit crew to work the locks!

• It is important to have at least two able-bodied carers to help with handling the boat, which at 63 feet long can accommodate up to seven people.

and Mum and I were enjoying a glass of wine in the lounge or on the terrace.

Dad always seems sprightlier after we return, and Mum more relaxed.

Good luck to anyone who chooses to do this, and if you need any information, please do not hesitate to ask and I will try my best to answer!

Love to all, Marisa x

Fly Away…A few years ago, I started holidaying with my parents again… (Marisa’s father is living with PSP)


As yet, there is no specific treatment to slow the progression of PSP, so the aim of the caring and medical

professionals is to help reduce the effects of PSP on the person and their family – to enable them to do what they want to do, within reason of course!

Good palliative care will allow the

individual to make the most of their abilities, even where restricted by a medical condition. It is ‘… the active holistic care of patients with advanced progressive illness… the achievement of the best quality of life for patients and their families.’ (National Institute for Health and Clinical Excellence, 2004)

Care when it is neededDr David Oliver is a Consultant Physician in Palliative Medicine at Wisdom Hospice, Rochester, Kent and Honorary Reader in Supportive and Palliative Care at the University of Kent.

Palliative Care

Dr David Oliver, who has led the development of the ‘End of Life Care’ booklet and is chairing the PSP Symposium on 28th September 2011.

Here he talks about palliative care…


What is palliative care?It can include many aspects:• Physical – assessment and on-

going management of the physical symptoms, such as pain, stiffness and breathlessness

• Psychological – addressing and listening to fears and concerns about the disease and the changes the individual is facing

• Social – listening and helping with family issues; addressing the concerns over how members of the family are coping, or the practical issues of caring (including financial support and claiming of relevant benefits)

• Spiritual – looking at the deeper issues – the fears for the future, the unresolved questions in life, such as ‘why me?’ There may be no easy answers but sharing these concerns can help

It can also involve any health and social care professionals who are supporting

“ Everyone with PSP is different, but we do know that there will be changes with time and it helps to plan ahead...”

Follow us on Twitter @pspassociation

someone with PSP or CBD, including the GP and district nurse, a specialised rehabilitation team, neurologist, specialist nurses and other professionals and a specialist palliative care team – often based within a hospice.

Hospice CareToday, hospices see many different people (including those with progressive neurological diseases such as PSP) and help them in different ways – with varying levels of involvement or support often over many years.

• Care is adapted to suit individual needs, including:

Care at home – specialist nurses, in collaboration with the GP, and perhaps the involvement of physiotherapists, occupational therapists, speech and language therapists, social workers / counsellors

Day hospice – provides the opportunity to meet others and enjoy activities (and often assessment by other professionals)

Inpatient hospice – looks at difficult problems and sorts out issues, with the aim of returning home or for care at the very end of life

Care and support in hospital – in collaboration with the ward staff and / or specialist nurses

Everyone with PSP is different, but we do know that there will be changes with


time and it helps to plan ahead - as early as possible - to ensure the individual’s views on care are taken into account. It may become more difficult to talk about these issues later, so while talking and discussion are easier, consider:

• A Lasting Power of Attorney

This can be for health and welfare or financial decisions

One, or more, people are legally appointed to take decisions for the individual, if they are unable to make decisions for themselves

• An advance decision to refuse treatment

A declaration detailing treatments that you do not want, such as antibiotics for a severe infection, admission to hospital or resuscitation

A form can be signed and witnessed and becomes legally binding if an individual cannot make their own decisions

• A ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNAR)

A doctor can complete this - if the heart stops, treatment to restart it would not be given

Also consider completion of a will and funeral arrangements. Many funeral

Katie Rigg

PSP Nurse Specialist, Katie Rigg commented that “In the last 5 years, there has been increased recognition of the importance of palliative care. Many GP practices implement the ‘Gold Standards’ framework, which means they will add your name to their palliative care register and keep everybody across the practice alerted to your current and developing needs. It is not only ‘end of life care’, or only for people with cancer; it is about ensuring quality of life.”

The PSP Association has been closely involved in compiling the booklet, ‘End of Life Care in Long Term Neurological Conditions – a framework for implementation’. This aims to help all professionals and increase awareness of PSP in the wider community. The booklet can be found at www.endoflifecareforadults.nhs.uk/publications/end-of-life-care-in-long-term-neurological-conditions-a-framework or by calling the PSP Association.

Palliative Care

directors take details and pre-payment - knowing a loved one’s wishes can alleviate stress for families and help them to cope at a difficult time.

Although looking at the future may seem very hard, it can be very useful and allows greater planning and more involvement for everyone – the person, the family and the carers.


Other useful references‘Improving end of life care in neurological disease - a framework for implementation’, can be found at; www.endoflifecareforadults.nhs.uk/publications/end-of-life-care-in-long-term-neurological-conditions-a-framework

‘Preferred Priorities for Care’ document - for more information and for the National End of Life Care programme, visit www.endoflifecareforadults.nhs.uk

The Dying Matters coalition is encouraging everyone to talk about their wishes towards the end of their lives. It’s in all our interests to talk about it, before it’s too late. Find out more or join the online discussion at www.dyingmatters.org/

The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland. NCPC works with government, health and social care staff and people with personal experience to improve end of life care for all. www.ncpc.org.uk/ or call 02076971520.

Disabled Access Holidays Website: www.disabledaccessholidays.com/contact_for_Disabled_Access_Holidays.asp

One way of maintaining control as PSP progresses is to plan ahead and anticipate needs.

‘Advance care planning’ includes an ‘advance statement’. This is a written expression of personal wishes and preferences in relation to your care. It cannot be used to demand a specific treatment (although you can make an Advance Decision to refuse treatment - ADRT - which is legally binding) and it cannot be used to refuse basic care. No specific format is required, but it must be in writing, witnessed, and if life-sustaining treatment is being refused, must include the wording ‘even if life is at risk’. It is a good idea to discuss this with a medical professional to ensure

that the implications of the refusals are understood.

Completion of a ‘Preferred Priorities for Care’ document can help to prepare for the future by providing an opportunity

to consider, discuss and document preferences and priorities for care at the end of life.

Completion of these documents

does not mean that access to other care and treatment stops and you can review them at any time. There is a huge amount of information available and the recently published, ‘Improving end of life care in neurological disease - a framework for implementation’, is an excellent resource and well worth a look.

Anna Kent RGN BSc (HONS), Neurological Conditions Clinical Specialist at Bletchley Community Hospital Site, Milton Keynes, offers some advice on planning ahead:-

“ There is a huge amount of information available...”

New song released in aid of PSP - Download “We All Fight Together” by Van Ryn from iTunes http://t.co/uez2FRi all proceeds to PSPA.

Please take part in our survey! We are running an online survey to help us understand where the difficulties are for you in getting the support and services you need. We will be using the results of this survey to lobby Government and other key policy makers to improve services for PSP and inform our strategy for 2012, helping to guide our plans to support you, and we hope that as many people as possible will take part in it.

The survey aims to give a first impression of services across the UK from the perspective of people living with PSP, and those who are caring for them. By contributing to this survey, you will not only be giving us direction for 2012 but will also help us to develop a more in-depth study into services next year (with a lot more ways for you to share your views and over a longer period of time), to help inform

and influence policy makers, ultimately making a real difference for people affected by PSP across the UK.

For further information and to take part, go to: www.surveymonkey.com/s/N88R5Z3 survey for People living with PSP or www.surveymonkey.com/s/NC3SMDY for the Carers/Former Carers survey. Survey deadline: 14th October.


Telling it as it is… Musings and snippets on life with CBD from Ray Wiffen

Personal Experiences

I was diagnosed with CBD in 2008… each day brings another hurdle, but if you have a positive attitude it helps

get over anything. I’ve seen the Parkinson’s nurse a

handful of times - it just seems like you have to wait so long for an appointment these days. The last time I saw her, she referred me to the PSP clinic at Addenbrooks Hospital in Cambridge. I’m still getting a lot of help from Gill Salt, the Parkinson’s UK support worker, anything you want or any help you need, she is the one to turn to.

My speech and language therapist told me last year that she was putting my name forward for the Lee Silverman voice treatment. Good news! They’ve told me I’m getting it.

Last year I took part in the expert patient programme run by the NHS. Everyone on the six-week course was great - they hadn’t got a clue what to think when I told them I had cortico basal ganglionic degeneration, nobody had ever heard of it! That’s why it’s

important to tell a wider audience about these rare neurological brain diseases.

Anyway, on the course I met a lady called Karen Peters who is a holistic therapist, who has just started Emotional Freedom Technique (EFT). She asked me to be her ‘guinea pig’. I agreed, as I didn’t have anything to lose - and the treatment has been amazing! It has stopped me being stressed, I don’t think about having CBD any more, I now have the feeling back in my lips (which were always numb) and it’s nearly stopped my right hand

Ray with his daughters, Stacey and Leonie

Ray Wiffen

tremor (which was getting very bad). I know some people don’t like to try new treatments but I thought, ‘why not?’ and I’m glad I did, as EFT has helped me stay positive towards my illness - and that’s the best way to be, I think.

At the moment, I’m still able to get out and about as I have a mobility car. It gives me a bit of independence, so I can drive to see my family and friends and go to my hospital appointments. UPDATE I went to see the consultant neurologist (the first time I’ve seen him for just over a year). He carried out a thorough examination and then asked me to sit down as ‘I’ve got some good news for you!’ He then told me that I hadn’t got any worse in the last year – in fact, some of the symptoms have improved slightly. He was amazed at my condition but I put the progress down to the weekly EFT holistic therapy sessions. The consultant said it’s not a cure but [I feel] it is sure helping with my symptoms. So, I would recommend it to anybody!

“ That’s why it’s important to tell a wider audience about these rare neurological brain diseases..”


‘Our Journey’Excerpts from the diary of Ray KinchinDuring a holiday in Croatia, Roy’s wife, Maureen, complained of a tingling sensation in her left hand and arm and problems with arm and leg co-ordination whilst swimming.

On retuning home, they visited their GP again. Maureen was referred to Dr Desmond Kidd, Consultant Neurologist at the Royal Free Hospital London and underwent an MRI brain scan and other tests.

Ray takes up the story…

Tuesday 31st March 2009Maureen diagnosed as being in the early stages of Cortico-Basal Degeneration (CBD). News to change our lives. (It is a terrible shock, especially after months of anxiety and several visits to the GP along with various blood tests and X-rays – we didn’t expect this, as the previous results had all came back as ‘normal’.)

Spring 2009Holiday! Venice on the Orient Express – magical.

Summer 2009Stair lift installed – Maureen resisted quite strongly at first, but has given-in to it in the end.

Ray would like to thank Dr Kidd, Hertfordshire Adult Care Services, Sage Care and Crossroads Care, as well as Maureen’s general practice who look after her on a day-to-day basis and the PSP/CBD Association Specialist Nurse, Samantha Pavey – a great team to have around us to deal with any issue. That’s a very comforting thought.

March 2010One year since Maureen’s diagnosis. I have been looking after her on my own. I am both physically and mentally exhausted. Have spoken to family and friends, and finally decided to find help. Eventually put in touch with the

county’s Adult Care Services.A visit from an Occupational

Therapist resulted in delivery of a special profile bed, a free-standing hoist installed and regular visits from Care Nurses (three times a day) to give Maureen personal care, as well as carrying out the morning and evening duties.

Have also arranged for Maureen to visit a day centre twice a week, to have lunch and enjoy the activities and in particular the art class - although I think that the French male art teacher might have something to do with it!

Summer 2010Holiday on a boat on the Norfolk Broads with friends, Bob and Jenny - good friends are so important.

Summer 2011Two Care Nurses sit with Maureen every Friday, I take a break and play a round of golf with my friends, and enjoy a pint or two afterwards! All the ladies who care for Maureen have been lifesavers, as without their help and support I do not know what I would have done - each of them deserves a medal!

Our AnniversaryIt’s been over 50 years - two married sons and four granddaughters. I am so

grateful for the many foreign holidays and interests that we have shared over this time.

TodayMaureen is asleep in her chair, the sun is shining. As soon as Maureen wakes up it will be time to prepare lunch and then the care nurses will soon be here.

Every month we have our good friends to dinner (they provide and cook the meal and we provide the hospitality, wine, cheeseboard and liqueurs) and we have a very enjoyable evening. Maureen joins us at the dinner table in her wheelchair and as far as I know, seems to enjoy the stories and the banter.

Maureen and Roy at a recent dinner.

Maureen enjoying a boat ride with friends Bob & Jerry


Personal Experiences

Your Story MattersThank you to Maggie and the two Rays for telling us their stories. The Association values case studies, articles and visual images from people living with PSP or CBD, carers and supporting professionals. Case studies help us to raise awareness and understanding and are used to:• Encourage healthcare professionals to understand the real, everyday

impact of PSP or CBD

• Highlight the difference that an early diagnosis, supportive care and forward planning can have on quality of life

• Help ensure that services develop in response to real needs

• Find clues about the causes and potential treatments

• Raise awareness

If you would like to tell your story, please email [email protected] or telephone 01327 322410.

Guide questions can be provided, but please feel free to tell your story your way. It can help to keep a diary (also useful when building a case to claim for benefits or other types of support) and we always welcome photographs (2 - 4mb in jpeg format, please).

We understand that everyone’s situation is different. If you would like to speak to one of our PSP Nurse Specialists, please contact the Association on 01327 322410.

Peaceful MemoriesMaggie Hunt, whose husband Richard had PSP, tells of their experience with the care home

My husband, Richard, was diagnosed with PSP in 2004. After four years of caring for

him at home, with breaks of respite care, I knew I could cope no longer. We decided he should go to the local hospice, as it was familiar, but a year later we needed a place with more experience of people with complex neurological conditions. We found just the right one in May 2009 – it looked more like a hotel!

The home had knowledge of PSP and everyone seemed aware of what it entailed – that was very reassuring. With staff, we discussed and documented Richard’s end of life decisions. The forms were completed, signed and stored for safekeeping.

During his two years at the care centre, he was always treated with love, respect and dignity and he loved the staff back. He was taken for walks every day and I was always included in any decisions.

When Richard’s condition deteriorated, he summoned the energy to tell us to stop trying to feed him. He knew…

I was kept informed of what was happening and the staff were calming and reassuring at all times. My daughter

stayed with me, as did our little dog, Millie, who lay quietly on the bed. Everyone was so kind.

The care he had received was the best he could have had. The staff, every one of them, were brilliant. They knew exactly what to do and worked with quiet efficiency and dignity at all times. I will never forget their kindness.

Richard celebrating Christmas 2010

Maggie and Richard

“ ...he was always treated with love, respect and dignity and he loved the staff back.”


Life-enhancing benefits Angela Jefferies, a Parkinson’s Disease Information & Support Worker (ISW), tells us about her role and how she helped one person claim life-enhancing benefits:-

Angela with her team

Angela and DianneMy role is to provide up-to-date information on Parkinson’s and Parkinson’s Plus syndromes

and to support, not only the individual diagnosed, but also their family, friends and carers. There are approximately 120 ISWs across the UK and we are local to the areas where we work, so can offer key information on nearby support networks. We also provide guidance through the sometimes complex benefits and services systems and with a new government and changes in health and social care, it is vitally important for individuals to have their needs recognised and assessed correctly. We are here to ensure people receive the help they need - we are happy to liaise with health and social care and be a supporting voice if required.

For example, let me tell you about Dianne. I met her at the Northants Younger Persons Group. Another group member had mentioned to her that she might be entitled to Disability

Living Allowance, so she wanted to have a word with me about applying. After a chat, I gave Dianne the number to call and asked her to get in touch when the form arrived. It did, and we then duly completed the necessary paperwork.

The application forms can be daunting, there are sixty-odd questions and if you are not feeling well or have difficulty writing or concentrating, it is easy to be put off. It does take a while to complete, but do try to be as descriptive as possible and go into detail by explaining particular symptoms and how these affect day-to-day living. It was worth the effort though, and Dianne received a very good outcome and was also able to secure a new car through the Motability Scheme.

Dianne was eligible for other benefits, including Carer’s Allowance for her daughter, Employment Support Allowance (ESA) and also physiotherapy sessions from the Long Term Conditions Team. Occupational Therapy installed a handrail in her garden, a bed loop to provide a strong rail to assist with getting in and out of bed and a shower stool.

Dianne was initially diagnosed with Parkinson’s Disease but because of increased falls her neurologist now believes she has PSP. I helped her gather

Dianne says:“Angela has been really helpful, as I would not have managed to fill out all the forms myself. It was also very reassuring to have her with me at the medical appointment for my application for ESA. She provided a supportive voice to ensure the examiner had all the facts. I know that Angela is just a phone call away and that she will support me and act as an advocate should I need her.

I would highly recommend anyone to get in touch with his or her local ISW and to get involved in any local groups. Joining The Younger Persons Group in Northampton has opened up opportunities to me to receive really excellent support and I have made some fabulous new friends.”

To find out about Parkinson’s UK local Information and Support call the free, confidential helpline on: 0808 800 0303 or Head Office: 020 7931 8080 or visit www.parkinsons.org.uk.

information about PSP and directed Dianne to The PSP Association and found another lady who had recently had a similar experience and suggested they have a chat.

Dianne has now joined The PSP Association and together we have attended two meetings and met the team and other individuals affected by PSP.

Benefits


Research

In the SpotlightDr Selina Wray is an ARUK Research Fellow in Professor John Hardy’s group in the Department of Molecular Neuroscience, UCL Institute of Neurology, London. Selina works on the molecular basis of Alzheimer’s disease, Frontotemporal Dementia and PSP, and blogs about life in the lab at: www.whatsyourlifelike.com/index.php/bloggers/profile/selina-wray

PSP Matters talks Dr Selina Wray, who gained an MSc in Biochemistry and Biological Chemistry from the University of Nottingham in 2004. Selina, 29, is one of many young researchers working in neurology and has been involved with PSP research – working on projects funded jointly by the Medical Research Council and the PSP Association.

Studying images of tau

Alzh

eim

er’s

Rese

arch

UK


When did you decide on this career?

I knew I wanted to go into science from secondary school, as science was what I enjoyed and what I was good at. I studied biology, chemistry and physics at A-level and then decided to read Biochemistry at Nottingham University. It was during this time I decided I wanted to pursue scientific research, and in particular medical research.

When did you decide to specialise in Neurology? What drew you to it?

We had several lectures about neurodegeneration at university from really great lecturers and during my final year I did a summer vacation project studying Parkinson’s Disease in the lab of Dr Rob Layfield at the University of Nottingham. This is when I decided I would specialise in this area, and I was lucky to secure a PhD position in Dr Diane Hanger’s lab at the Institute of Psychiatry, Kings College, London - where I first started working on PSP.

What do you think are the main challenges in your role and also neuro research overall?

Funding and capacity. If we take Alzheimer’s Disease as an example, it is the most common and well-known neurodegenerative disease, yet receives 12 times less funding than cancer research. This is not to say any less money should be given to cancer research, more to say, if research into neurodegeneration was equally well supported, progress towards new treatments would be much more rapid.

Why do you find PSP interesting?

In many disorders, including PSP, tau proteins abnormally build-up in the brain. I am interested in understanding how these occur and how they cause brain cells to die. How the tau protein can be involved in these [types of ] diseases is a fascinating scientific problem.

What do you think the main challenges in PSP research are?

Understanding the differences between PSP and other disorders is an important area of research and one where progress is being made all of the time – the recent study showing new genetic risk factors for PSP is a huge step forward. The next challenge is to understand how these genetic risk factors make people more likely to develop PSP. Also, the challenge of improving early diagnosis of PSP is clearly a very important area.

How do you see your future?

I still have a year left on my current fellowship, which I am hoping to use to generate new data, so that I can secure further funding to carry on research in this exciting area! In the long term, I am trying to learn as much as possible now, so that one day I can lead my own research group.

“ Understanding the differences between PSP and other disorders is an important area of research and one where progress is being made all of the time.”

Cell Culture Dishes

Alzh

eim

er’s

Rese

arch

UK

environmental risk factors, which alone do not cause disease.

In PSP, it was clear that the H1 variant of the tau gene was not the only genetic risk factor. However, we have 20,000-25,000 other genes with their more subtle and benign variations that are transmitted to us from our parents. Until just over a decade ago, we would have had to look at each of these genes individually, and this would have been near impossible and hugely expensive. But in the past decade, technological advances are enabling us to map variation in all genes in an individual, with ever-increasing resolution, and all these variations are represented on a detection platform that is no larger than a microscope slide.

The recently published work was funded by Cure PSP, the PSP Association’s sister organisation in the US. It involved a collaboration of more than a hundred clinicians and scientists in Europe and the US and included critical contributions of samples from the Sara Koe PSP Centre and Queen Square Brain Bank. In total, about 2,300 PSP cases were investigated and following the immense task of analysing the mountains of genetic data from these cases, variation in several new genes was identified that contributes to the risk of PSP.

Unsurprisingly, the tau H1 variant remained the strongest genetic risk factor for PSP. However, the other genes implicate several new processes within the cell and thus provide us with exciting clues as to how these processes contribute towards the healthy function of those nerve cell groups that are vulnerable in PSP.

The most telling associations are of a syntaxin gene and two other genes that are codes for the so-called ‘PERK’ and ‘MOBP’ proteins. The syntaxin and PERK associations suggest that the processes within the cell that regulate the movement of proteins, as well as the correct disposal of defective protein


Research

Updates An American-led international team of researchers, which in-cluded Professors Andrew Lees, John Hardy, and Dr Rohan de Silva, of University College, London, has succeeded in identifying three new genes that can increase the risk of people developing PSP. Dr de Silva reports…

In July, a landmark paper was published in the prestigious journal, Nature Genetics, with the most

comprehensive study of the genetics of PSP and CBD to date. For a long time, it has been recognised that the so-called ‘H1’ variant of the tau gene contributed to increased risk of PSP and CBD.

This fits in well with the fact that nerve cells in the PSP and CBD brains are clogged-up with aggregates of the tau protein (called ‘tangles’) and it is clear that the tau gene, and abnormalities in the tau protein, are important contributors to the processes that lead to nerve cell loss and the ensuing symptoms of these disorders.

However, although variations in genes contribute to disease risk, PSP and CBD in general, are not inherited genetic disorders - that is, there is no parent to offspring transmission of these diseases. The more benign genetic variations

Figure 1

Figure 2

form the basis of our diversity and, at most, have a subtle effect on gene function. For this reason, if we inherit one genetic risk variant, for example, the H1 variant of the tau gene, this does not necessarily mean that we will get PSP or CBD (about 75% of the population carry the H1 variant but only about 6-7 per 100,000 of the population get PSP). Instead, it is clear that this would require the combined effects of two or more such genetic variations, as well as

Dr Rohan de Silva


(such as the clumped tau protein), are affected. This fits well with the current dogma that the vulnerable cells accumulate defective tau protein due to a combination of excess levels of tau and the loss of the cell’s capacity to dispose of this excess tau. This study now provides two precise targets for further study and, ultimately, the development of treatments against PSP.

The MOBP protein is a component of the myelin sheath found wrapped around the axons of nerve cells. Axons are the long processes that extend from nerve cells (neurons) and provide the basis for the intricate and coordinated connectivity

between the estimated 100 billion neurons in the human brain. The myelin sheath is essential for the maintenance of axons and for transmission of electrical impulses between nerve cells. It is possible that subtle changes in the connectivity of the nervous system lead not only to the symptoms of PSP but also the loss of particular groups of

neurons.The identification

of these and several other new genes implicate particular processes within the cell and provide us with exciting new avenues of research. However, it remains a huge challenge to

find out how the subtle effects of the genetic variations can cumulatively over

a lifetime lead to the deficits and loss of nerve cells seen in PSP.

Much of this important work would have been impossible without the long-term support of the PSP Association and also PSP patients and their families.

“ Much of this important work would have been impossible without the support of the PSP Association...”


Gordon McCauley, Allon’s President and CEO, said the trial has enrolled approximately

50% of the 300 patients specified in the protocol. Enrolment began in the fourth quarter of 2010. The trial is being conducted under a Special Protocol Assessment (SPA) granted by the United States Food and Drug Administration (FDA), which ensures that the agreed clinical trial design meets the FDA’s expectations for a pivotal study.

“Our progress is right on track with our estimate to complete enrolment by the end of 2011 and to report data about a year later,” said McCauley. “The pace of enrolment is a testament to the patients, caregivers, investigators, and advocacy groups who have been

Allon Therapeutics & Davunetide Allon Therapeutics Inc. issued an update on the progress of the pivotal Phase 2/3 clinical trial that is evaluating the company’s lead neuroprotective drug candidate – Davunetide - as a potential treatment for PSP.

tremendous partners, and who certainly hope this trial will generate data necessary for marketing approval of ‘Davunetide’ as a treatment for PSP.”

McCauley also said the trial’s Data Safety and Monitoring Board (DSMB) recently approved the continuation of the trial. A DSMB is an independent group of clinical experts with the primary responsibility of monitoring the safety and well being of subjects and assuring the scientific integrity of the study. A DSMB is independent of the company and the clinical investigators, who are blinded from the safety and efficacy data until all treatment has been completed.

This multi-national study is being conducted at premier medical

institutions in the United States, Canada, the United Kingdom, France, Germany, and Australia. A list of the clinical trial sites can be found at www.clinicaltrials.gov.

PSP is one of a group of progressive neurodegenerative disorders called fronto temporal dementias (FTD) that affect movement, speech, and behaviour, for which there are no approved treatments. There are approximately 25,000 and 50,000 persons, in the U.S. and EU respectively, who have PSP.

Approximately half of FTDs, including PSP, are tauopathies, or involve impairment of the tau protein in brain cells. Allon expects that demonstrating efficacy in PSP will define the


Researchopportunity to use ‘Davunetide’ in other tau-related diseases, such as Alzheimer’s, schizophrenia, Parkinson’s and several subtypes of FTD. Additional note:The pathology of PSP and Alzheimer’s disease is similar in that both diseases involve impairment of the brain protein tau - and ‘Davunetide’ is the most advanced tau therapy in the world. Allon has demonstrated a strong scientific and clinical rationale for the potential efficacy of Davunetide in PSP, driven by the demonstration of activity in preclinical models of tauopathies and clinical efficacy in amnestic mild cognitive impairment, an early form of Alzheimer’s disease known to be associated with the build-up of tau tangles. Davunetide has received orphan drug designation in the United States and the European Union as a treatment for PSP, and fast track status from the FDA.

Allon Therapeutics Inc. is a clinical-stage biotechnology company focused

Brain donation can be a difficult subject to broach for many, partly because donation can only occur after death. At the QSBB, Karen Shaw, the QSBB nurse specialist, and Susan Stoneham, administrator, have over 15 years’ experience of discussing the benefits and importance of brain donation with patients, relatives and the public. Karen believes that because the donation provides the opportunity to contribute towards advancing medical knowledge, and helping others in the future, it often enables patients and relatives to salvage some meaning

from an otherwise distressing situation. Karen and Susan recognise the need to discuss the rationale for donation so that it is fully understood by patients and families, and that consent to donate can then be given in an informed way. Research into PSP can only continue through the generosity of people who, during life, agree to donate their brains for research. If you wish to discuss brain donation or want to find out more, please contact Susan Stoneham or Karen Shaw at the Queen Square Brain Bank on 020 7837 8370 or email: [email protected]

A different way to donate

Research studies into PSP quite often require the use of human brain tissue. The Queen Square Brain Bank (QSBB) has a collection of PSP brains generously donated by individuals for this purpose.

on bringing to market innovative central nervous system therapies. Allon’s lead drug Davunetide is proceeding in a pivotal Phase 2/3 clinical trial in an orphan indication, progressive supranuclear palsy (PSP), under an SPA with the FDA. This pivotal trial is based upon statistically significant human efficacy demonstrated in amnestic mild cognitive impairment (a precursor to Alzheimer’s disease), cognitive impairment associated with schizophrenia, and positive biomarker data.

For more information, visit www.allontherapeutics.com

Help Support PSP Research

Research into PSP has contributed to a clearer understanding of the

pathology of the disease and how widely it occurs, but our ultimate aim is to find an effective treatment and eventually a cure.

Leaving a Legacy is one way to contribute to the ongoing work of The PSP Association. We depend on the generosity of people who have remembered our work in their wills. Leaving a gift to The PSP Association is an exceptional way to mark your life and demonstrate your commitment to helping people with PSP.

If you would like to include The PSP Association in your Will we advise you to discuss this with a solicitor. For more information please contact [email protected] or call 01327 356132


Letters

Just the two of us…

We would love to hear from you. Please write to us and tell us what is happening in your area. Send your letters to the Editor at PSP House, 167 Watling Street West, Towcester, Northants NN12 6BX or email to [email protected]

When my husband, John, and I started out on our journey with PSP, how it would all end was something I didn’t want to contemplate. Day to day living was complex enough without thinking further ahead.

Three years ago the two of us came out of the consultant’s room in total disbelief, after being given this unknown medical term as a diagnosis, but more shattering was that we were told that there was no treatment and no cure. In other words…no hope!

Perhaps the first word ‘progressive’ should have given us a clue of what was to come, but we were in shock. It was only when my family and I trawled the internet that the devastation of this diagnosis became apparent.

John refused to talk or learn anything about PSP – or indeed admit that there was anything wrong with him – this was his way of dealing with it all. On the other hand, I had to find out all I could about PSP to enable me to cope with it.

In the ensuing years, as John went from using a stick to a three wheeled walker, then to a four wheeled walker and finally to a wheelchair, it became clear that PSP was progressing very fast. As we met and dealt with all the stages, how it would end began to trouble me more and more. Would he have to go into hospital or a nursing home? (Something neither of us wanted). Would I be able to look after him at home? Would we get enough medical help at that time? But uppermost on my mind was the question – would he choke to death? Choking on saliva, on phlegm and on food and liquid was a frightening idea for both of us, but one we had to adjust to, like everything else. However, the thought that one of these episodes could result in his death was a scary thought for me.

While little is written about how it


would end, for my husband it was very peaceful. He was only in bed for three days before his death and all the time he was very aware of being in his own home with his family around him. The expert care and attention he received from the doctor and the district nursing team and carers were excellent. With a morphine patch, oral morphine and sedative, he was kept calm, peaceful and pain free.

Each of our family said their goodbye in their own individual way and just as the two of us had started out on this journey together, so it ended. On a spring morning as the dawn was coming up, we parted company until we would one day meet again – just the two of us!

Hazel Calderwood

PSP Facts…Hi everyone,

As we all know, it is extremely difficult to explain to people what PSP actually is. I find that carrying a supply of the printed information cards available from the PSP On-Line shop helps. I hand these out to anyone who asks about the illness (even those who don’t sometimes!) so that we can spread the word about this very cruel and debilitating illness. I am of the opinion that the more people who know about the illness the more likely we are to generate enough interest into getting more research done to find treatment and ultimately a cure.

For anyone who is not aware already, these cards are free from the PSP On-Line Shop http://shop.pspeur.org/.

Suzie

Meet our new TrusteeSylvia Denton, CBE, FRCN, has recently been appointed to The PSP Association’s Board of Trustees. Sylvia is a highly experienced healthcare leader, educator and manager who has enjoyed a distinguished clinical career as a nurse and health visitor.

A pioneer specialist nurse in cancer nursing, specialising in breast cancer care, Sylvia has achieved national and international recognition and has served on many government bodies - playing a significant part in the healthcare political arena. She has undertaken a key leadership role in a large national and international professional body, and developed an extensive network across a range of health and social care disciplines including government, charities, the NHS, and private healthcare.

We welcome Sylvia and value her input to the Board


Fundraising

It was the summer of 2009 when Steven first dusted down his old bike and took to the saddle – viewing

the event as a good opportunity to get fit and to raise funds in memory of his Mum.

This first ride was a success, so the next year, Steven invested in a better bike and persuaded a larger group of friends to join him. But he knew he had to ‘raise the stakes’, if he was to motivate people into sponsoring him for a third time. He had noticed that others had ridden from the Eiffel Tower to Blackpool Tower for charity and thought

The Ball family goes from Tower to Tower

that this would be such a big challenge for him that it surely would encourage people to support him again.

So, along with sons Craig and Adam, the preparations began – route planning, fitness training, choosing the right bike and eating the right foods. Steven was supported by his local gym and nearby bike shop as well as friends and family who regularly cycled with him 2 or 3 times a week. The challenge came in May of this year, Steven tells the story:- Day 1 We travelled down to London on the train to get the Eurostar. In Paris we

were met by Isabelle Le Gal from the PSP Association France. We are grateful that she and Fabrice, her partner, put us up for the night.

Day 2 Began with lots of lovely sunshine at the Eiffel Tower. After a few photos, Isabelle and Fabrice guided us to the outskirts of the city and then we were on our own and off to Evreux. I had GPS on my bike and that showed us the way for the next 69 miles till we arrived, still bathed in sunshine, at the town.

Day 3 Our last day in France and after a typical French breakfast of croissants and bread, we put on our rucksacks and cycled to the coast to catch the ferry. The weather was changeable and the journey was long, but 83 miles in wind, rain and sunshine is not quite enough to put you off the beautiful rolling countryside you see as you pedal along. We arrived at the ferry port in good time and settled down for the night crossing to Portsmouth.

Day 4 Back in England and we were met by my dad, John, acting as support driver until the end of the ride; it was great to cycle without the backpacks! France’s miles of long roads with occasional hills were substituted with England’s bumpy roads and constant hills - in all, we climbed approximately 1/2 the height of Mount Everest, (15,000 feet) during our ride. After 92 miles (riding though hailstones at one point) we were ready for our beds.

Day 5 Probably the most daunting - a near 100 mile ride to Telford from Swindon. Very early on in the ride we had our first puncture but the spare inner tube was also punctured – so much for planning! This meant

A sponsored bike ride from Manchester to Blackpool encouraged Steven Ball – and his two sons - to take up the challenge to pedal the 500-odd miles from the Eiffel Tower to the Blackpool Tower. Here’s the story of their journey…


If you’d like to raise funds for the PSPA, please visit www.pspeur.org/get_involved/fundraising_events/ for ideas and information or contact [email protected]

The Ball family goes from Tower to Towera dash to the nearest bike shop for our support vehicle to get the wheel fixed and replenish our spares. The hills kept coming, the legs ached and we longed for a comfy chair instead of that damned saddle.

Day 6 For me, this was the toughest. However, the prize at the end was to sleep in my own bed before the last day. My sons have all the splendour of youth and were still fighting fit for today’s 73-mile ride but had the good grace to nurse their ‘old man’ to the end. My wife, Deb, and daughter, Zoë, had decorated the house for our return with ‘welcome home, one more day to go’!

Day 7 We were joined by 5 others for the last leg of 40 miles, it also proved to be the hottest day of the year so far – 30 degrees C. This didn’t matter, as miraculously, the aches and pains

“ I am sure most of us have reason to work to combat this disease and with a little determination it is possible. To date we have raised over £4000 and the generosity shown has been heart warming. If we all set aside just one weekend a year to organise an event of some kind, then we must be able to help the Association to continue its good work and move towards a world free of PSP.”

floated away and it was pure joy to cycle on to Blackpool and for once the hills were actually in our favour with a bonus tailwind. As we approached Blackpool, the Tower looked so beguiling and the pace quickened as we came ever closer. We were greeted by friends and then took the opportunity to rattle the collection buckets, one more time.

It was an outstanding experience, with a sheer sense of achievement and many wonderful memories.


Steven, Craig and Adam cycled in memory of Steven’s

Mum, May Ball (right) who had CBD.

Empower others

The Vitruvian TriathlonHaving previously taken part in two marathons for the PSP Association,

Dave Pendleton has decided to go for the hat-trick, and in true ‘3 for PSP’ style, will be taking on the Vitruvian Triathlon this autumn in

memory of his uncle, Mick Boyden, and of family friend, Dick Dauncey. Dave’s race will involve a 1900m open swim, an 85km cycle followed by a 21km run around Rutland Water in Leicestershire. Good Luck!

Brydon’s TriathlonWhen 10-year old Brydon Smith received his ‘3 for PSP’ pack, he took

on the challenge of creating his own triathlon. Brydon walked 3 miles, cycled 3 miles and swam 3 lengths of the local pool, raising £800 in memory

of his Granny Aileen. Brydon’s mother, Marianne, said, “Brydon really enjoyed his fundraising and he wants to do something again already! He got so much encouragement from people saying it was such a good cause, and even made it into the local paper to raise further awareness of PSP.”

3 Peaks Challenge As a recent graduate, 21-year old Danielle Bentley wanted a focus for her last summer before beginning a new job and thought that fundraising and

training for the ‘UK 3 Peaks Challenge’ in September, in memory of her Grandma Beryl, was the very thing. “I really want to be able to give something back to

the charity that not only helped my Grandma throughout her illness, but who have also shown immense support for my Granddad who has spent the years during my Grandma’s illness as her full time carer,” says Danielle. “The training has been hard work, but I’m not sure which is tougher, climbing 3000 vertical feet in such a short space of time, or keeping myself awake for at least 24 hours!”

3 Generations for PSPShirley Hurstwaite, along with daughter Jacquie and granddaughter Harriet held a 3 Generations Tea Party for PSP. Shirley’s husband, Derek, who is living with PSP, said he decided to leave his ladies to their party and had a gents’ afternoon with his friends instead, as each of the 3 generations of women brought 3 friends to the party and enjoyed tea, cakes, and a great girls’ day together!


Fundraising

3for PSP!1. Cause2. Treatment3. Cure

The funds raised from ‘3 for PSP’ will go towards funding our three main areas of research: identifying causes, developing effective treatments and finding a cure. Plus… ‘3 for PSP’ isn’t over yet! You can still take part and help raise vital funds for research into PSP and CBD.

3 TriathlonsBlenheim TriathlonIn 2010, Luke and Jack Hall teased their Dad about how long it took him to complete the Blenheim Triathlon, so when ‘3 for PSP’ was announced in 2011, he challenged his sons to do better this year...

The boys were joined by two school friends, and spurred on by the overwhelming generosity of their sponsors, they managed to cross the finish line in times well below their father’s 1 hour and 40 minutes.

Despite beating their father’s time comfortably, the boys admitted to a nervous anticipation prior to the race and said the triathlon was certainly no picnic; describing the swim as a “seething mass of piranhas”, which was then followed by a cycle that, in spite of padded shorts, the general feeling was “once chafed, always chafed”. And yet the generosity of their donors spurred them on and the boys triumphantly crossed the finish line having raised in excess of £9,000 for PSPA.

Derek, Shirley, Jacquie and HarrietLuke and Jack with their two school friends Ollie Davies and James Cordy-Redden


This year, we have increased the range to include 5 quality designs - varying in style and size - made using paper from sustainable sources.

We also have special PSP Association items, including pen, letter opener and badge sets.

Ways to order: 1. Complete the form that accompanies this magazine2. Order on line at www.pspeur.org 3. Call 01327 3561324. Email [email protected] and we’ll send details and an

order formAll proceeds from the Christmas card and gifts fund our work to support people living with and affected by PSP and to continue the search for a cure.

Christmas Appeal - Raffle for Research

Watch out for this year’s Christmas raffle – tickets will be hitting doormats in early October.

The prizes are:

1st prize - £500 2nd Prize - £250 3rd prize - £150

The draw will take place on Wednesday 14th December – with cheques sent out in time for Christmas!

Order tickets in advance at [email protected] or call 01327 356131.

Every penny counts in the quest for a cure. Please support the Christmas Raffle and Appeal.

Take the 2012 Marathon

Challenge for PSPA When: Sunday 22 April 2012

Registration Fee: £100

Sponsorship target: £2012 each

Do you want to be part of the biggest fundraising events in the world?

Do you want to race the route of the Olympic runners?

Do you want the chance to meet Olympic Gold Medallist, Chairman of

The London 2012 Committee and PSP Association Vice President, Lord

Sebastian Coe?

If your answer is ‘Yes’, then apply now for one of our 100 guaranteed places

for the Virgin London Marathon 2012 by contacting [email protected]

or call 01327 322419.

Last year our runners raised £120,000

Let’s make an Olympic effort in 2012 –

join our team now!

Christmas Cards & Special Gifts

Take the 2012 London

Marathon Challenge for PSPA

When: Sunday 22 April 2012


Sponsorship target: £2012 each

Do you want to join in one of the biggest fundraising events in the world?

Do you want to run the route of the Olympic runners?

Do you want the chance to meet Olympic Gold Medallist, Chairman of

The London 2012 Committee and PSP Association Vice President, Lord

Sebastian Coe?

If your answer is ‘Yes’, then apply now for one of our 100 guaranteed places

for the Virgin London Marathon 2012 by contacting [email protected] or

call 01327 322419.

Last year our runners raised £120,000

Let’s make an Olympic effort in 2012 –

join our team now!


Your Events

Karen Vaughan’s passion for rock climbing led her to El Chorro, Spain, where she planned to

lead several climbs, pushing herself to the limit to raise funds for the Angy Vaughan Tribute Fund, in memory of her mother. To ‘lead’ a climb is to ascend the rock face first, attaching the safety ropes as you go for those behind you, and because of this, its potentially more dangerous for the climber. Karen said,

Golden CelebrationCongratulations to Len and Margaret Sharples who celebrated their Golden Wedding Anniversary in July. Len, who is living with PSP, and wife Margaret decided they would ask friends and family to make a donation rather than buy gifts, and raised nearly £2,000 from their generous guests. Len said, “We had a great time with all our friends and family, and are delighted to have raised so much for the PSP Association. With 87 friends and family there on the night, I’d like to say thank you to everyone who made the evening such a success.”

Fore!Now in its second year, the Ludlow Golf day, organised by Alison Heuvelink, enjoyed wonderful weather and a fantastic day was had by all – raising some £800 for the Association. If you would like to organise your own golf day then please contact Alan Berry on 01327 322419 or email [email protected]

Harnessing Fundraising Power

“On the first day of climbing I didn’t lead anything and I didn’t think I was going to be able to work up any courage at all. I thought I was going to have to tell everyone I had to call it off, but all my friends had been so encouraging and generous.”

Karen bravely conquered her fear and led 17 climbs - raising over £600.

Alison with two members of the winning team

Len and Margaret Sharples with son Andrew, daughter-in-law Karen and granddaughters Alice and Emma.


Gala DayMichael Shepherd, together with Tom Willgoss and Nigel and Val Dakin, took a stall at the Pocklington Scouts Gala Day. They raised over £50.

A further £520 was raised by Michael and his ‘team’ as they organised a concert & musical evening featuring The Occasion Choir, based in Copmanthorpe, near York.

Ambassador for PSPEditor’s note: We received an encouraging letter from Ernie Atkinson, and have taken some excerpts from it, which is below:

“I recently had the pleasure of attending a carers’ exhibition held in the Guild Hall here in York where I met one of your ambassadors by the name of Michael Shepherd, a good shepherd indeed!

Michael explained in some detail the devastating effects that PSP has on a person and their carer. I soon realised that he was describing symptom by symptom my wife’s steady decline over the past few years. I should perhaps explain that my wife is suffering from the final stages of a non operable benign, but steadily growing, brain tumour on the cerebellum. She has been in a good nursing home for the past two years.

However, the purpose of this letter is two fold. Firstly, to pass on my thanks to Michael because our discussion was somewhat interrupted by a charming lady who I now realise was perhaps the Lady Mayoress of York! Secondly, for me to be able to obtain more information which I could discuss with the medical staff at my wife’s nursing home, who like me, have never come across PSP before.”

Come into the gardenA hidden gem in the small village of Moniaive, Dumfriesshire, was opened to the public recently as part of Scotland’s Gardens Scheme. Owner Alison Graham, along with her sisters, Chrissie Wright and Frances Courage, opened the garden in memory of their brother Duncan, who lived with PSP for several years. Sarah Landale, Dumfriesshire organiser for Scotland’s

Tom’s Team One family from Ballymun, Dublin, pulled together the biggest team of family and friends ever to run in the same event for the PSP Association. Sisters Suzanne, Sandra and Lorraine Kavanagh along with their mother, Angela, and 22 members of family and friends, ran in the Dublin Women’s Mini Marathon in honour of their father Tom, who is living with PSP. The family have raised over €3,300 and are hoping to continue raising awareness of PSP and CBD throughout the year.

Michael with Nigel and Val at the Scouts Gala Day

Occasion Choir Tom and family

Garden Scheme, said, “This is the most wonderful woodland garden nestling under the trees and it is somehow unexpected to find just where it is. In fact, you really have no idea that it’s there until you arrive in it!” The family served homemade teas throughout the afternoon and raised over £400.

The Open Garden in memory of Duncan


Your Events

Janet Morris and Stephen Bidwell recently married and in lieu of gifts asked for donations to the

PSP Association. Janet’s father, Alan, died from PSP in May 2009. From diagnosis Alan had a very short life of approximately six months - so during this time the illness progressed very rapidly. Throughout his life Alan had a love for transport, so for their wedding they decided to include a Routemaster bus and a steam train as they knew

that Alan would have appreciated these. The Routemaster bus was for their wedding day in London with family and the steam train was for a celebration with friends in the South of France a week later. They are delighted that through the generosity of their family and friends they have raised more than £2,500 for Alan’s tribute fund which will support research and the hard work of the PSP Association in the future.

A Special Day raises funds for research

Running for GoffLisa Quarmby, a district nurse who looked after well-known composer, Goff Richards, through his PSP, was so inspired by his vitality and infectious personality, that she decided to run the Manchester 10K to raise funds for the Association.

“I am going to continue raising funds for PSP, as I am running the London Marathon next year, and the other nurses, who also knew Goff, are planning to do some events to help raise funds too,” commented Lisa.

Goff was a prominent English brass band arranger and composer, whose arrangements included ‘Shepherd’s Song’, ‘Over the Rainbow’, ‘New York, New York’, ‘Chanson d’Amour’, and That’s a Plenty’.

Lisa with Goff Richards

Edinburgh Marathon, Half Marathon and Team Relay When: Sunday, 27 May 2012


Sponsorship target: £500 full marathon, £360 half

Join us for the fastest races in the UK; with a largely flat course the Edinburgh Marathon is the best race in which to beat your personal best.


Upcoming Events

For further details on how you can raise funds for PSP, please contact the Fundraising Team on 01327 356131 or email [email protected] and for more exciting fundraising ideas visit our website www.pspeur.org/get_involved/

Ho! Ho! Ho! - Santa Runs across the country November & December 2011Pull on Santa’s hat, coat and beard and join a festive fancy dress race. At a manageable 5K, the Santa Runs, Reindeer Dashes and Snowman Shuffles are a great way to get out with the family - walk, jog or skip - you choose!Visit www.santadash.co.uk

3 City Cycle for PSP When: 5 - 9 September 2012

Registration fee: £149

Sponsorship target: £1,700

Help us take ‘3 for PSP’ to Europe, as you cycle 300 miles, in 3 countries to 3 capitals - London, Amsterdam and Brussels

Silverstone Half MarathonSunday, 11 March 2012Race round the iconic Silverstone racing circuit, starting in the pit lane and running through the famous corners of Becketts, Stowe and Club to cross the line at the chequered flag.

“ Doing this run for my grandpa John has helped me find something good from this disease and I am so grateful to have been given the chance to show how much he meant to me!”Elizabeth Allan,Edinburgh Half Marathon 2011


Support Groups

Support Group MeetingsGroup Held Date & Time

Brentwood The Marillac, Brentwood, Essex Sat 24 September 2011, 14.30

Nottingham Shantha Nathan’s Home, Bramcote Fri 30 September 2011, 10.30

Cambridge Trumpington Village Hall, Trumpington Sat 1 October 2011, 10.30

Northumberland Stannington Village Hall, Stannington, Morpeth Mon 3 October 2011, 10.30

Edinburgh St Ninian’s Church Hall, Comely Bank Thu 6 October 2011, 15.00

Perth (Tayside) Room 2, Cornhill McMillan Hospice Thu 6 October 2011, 10.15

Bristol Sue Woolnough’s Home, Henbury Thu 6 October 2011, 13.30

Leicester Age Concern, Earls Shilton Thu 6 October 2011, 13.30

Cheltenham Leckhampton Court Hospice Tue 11 October 2011, 11.00

Camberley Corrina Lodge Thu 13 October 2011, 10.30

Salford Salford Royal Fri 14 October 2011, 13.00

Bedhampton Social Hall, Bedhampton Road Mon 17 October 2011, 10.30

Belfast Marie Curie Hospice Tue 18 October 2011, 14.00

Pocklington Burnby Hall Room Fri 21 October 2011, 10.00

Glasgow The Beardmore Hotel, Clydebank Mon 24 October 2011, 14.00

London The National Hospital for Neurology, Queen’s Square Mon 24 October 2011, 11.00

Barnsley Barnsley Hospice, Gawber Wed 26 October 2011, 10.30

Cardiff Ty George Thomas Hospice Care, Whitchurch Tue 1 November 2011, 11.00

Letchworth Garden City Garden House Hospice Tue 1 November 2011, 11.00

Liverpool The Neurosupport Centre, Norton Street Wed 2 November 2011, 11.00

Liskeard Echo Centre, Barras Place, Liskeard Mon 7 November 2011, 11.30

Dorchester Joseph Weld House, Dorchester Hospice Thu 10 November 2011, 11.00

Ipswich Sue Ryder Care, Hadleigh Road Tue 22 November 2011, 11.00

Dublin Mater Miseridordiae University Hospital Thu 24 November 2011, 12.30

Lancaster St John’s Hospice Fri 2 December 2011, 13.00

Towcester PSP House, Towcester Tue 6 December 2011, 13.30

Shrewsbury The Hamar Centre, Mytton Oak Road Thu 15 December 2011, 11.00

Wantage Mary Simmond’s Home Tue 31 January 2012, 11.00

The PSP Association has a network of local support groups across the country that offer a great way to meet others who understand what you are going through and to find encouragement and solutions.

The meetings are an opportunity to catch up, discuss the things that matter to you, support one another and enjoy a welcome break over a cuppa.

The Association works to accommodate the needs of different groups, which means they may run in different ways around the country. For example, some groups invite visiting speakers - healthcare professionals or benefit advisors, whilst others have arranged activities or equipment demonstrations and some have lobbied their local MP,

primary care trust or authority for better services. Often, our own PSP nurses share expertise on managing PSP and CBD everyday – each group is different.

If you would like to attend a group and are not already a PSP member or linked with your local group, please contact [email protected] or phone 01327 322415. (Booking is essential to help us manage venue numbers and ensure we can let you know about any changes beforehand.)

You never have to face PSP alone


ContactsMain:Telephone: 01327 322410Facsimile: 01327 322412E-mail: [email protected]: www.pspeur.org

Support:Debra Chand, Director of Care and Support: 01327 322414 [email protected] Wheeler, Care and Support Manager: 01327 322415 [email protected]

Nurses:Katie Rigg, Scotland, Northeast England and Cumbria: 01434 382564 [email protected]

Kat Haines, Northwest England, N. Wales, N. Ireland and Ireland: 01995 601533 [email protected]

Jill Lyons, Southwest England and S. Wales: 01934 842366 [email protected]

Samantha Pavey, Southeast England, East Anglia and London: 01747 841461 [email protected]

In addition to contributing your cash or time to support the PSP Association, you can donate shares and make a positive difference towards the services and research we fund.

Shares worth over £500 to donate? Please contact our Fundraising Team if you have shares worth more than £500 to give. We will let you know if we can accept them and what to do next. We can then send you a transfer form to take the shares out of your name and put them into the name of the PSP Association.

Shares worth less than £500 to donate? If you believe the value of your share certificates to be less than £500 an efficient way of disposing of these charitably is to donate them to ShareGift, the share donation charity (registered charity 1052686).

Make your voice heardPSP Matters is the magazine of the PSP Association, which is published three times a year. The Editor is always interested in your comments and welcomes potential contributions for future issues. Material may have to be edited prior to publication.

Please send your contributions to [email protected] or write to:The PSP Association, FREEPOST RSLR-ZTGA-HHAUTowcester, NN12 6BX

ShareGift is an independent charity which specialises in accepting small holdings of shares, particularly those which are not worth selling because that would cost more than they are worth. They will provide you with all the information you need to transfer your shares so that they can be used to benefit a wide range of UK charities.

The PSP Association has already received over £2,000 in donations from Sharegift thanks to supporters of the scheme. For further details, contact Sharegift on 020 7930 3737 or visit their website at www.sharegift.org. Please mention the PSP Association when you make a donation, as this will ensure that we continue to benefit from the funds. Alternatively contact our Fundraising Team on 01327 322418 and we will send you a ShareGift

donation coupon.

Useful information We recommend that you always seek advice from a financial adviser who can explain the best ways to give and your personal tax implications. The HM Revenue and Customs provides detailed information on giving land, buildings, shares and securities to charity. UK taxpayers may be able to claim Income Tax Relief on the value of shares donated to charity. In addition, there is no gain or loss for Capital Gains Tax purposes.

Donate shares and support people with PSP


Proud of helping withPSP Tribute FundsA lasting way to honoursomeone special

www.muchloved.com | Registered Charity No. 1118590 | [email protected]

Additional information To help us to continue to develop the services we provide to people with PSP we may write to you from time to time asking for your feedback and views. You will also receive PSP Matters, the membership magazine, three times a year. Please tick the following boxes as appropriate:I do not wish to be contacted I do not want to receive PSP Matters

All personal data will remain within the PSP Association and will not be shared with any other organisations or individuals.

How do I pay?You can pay your membership by cheque, credit or debit card. Some people also like to make a donation to The PSP Association for which we are always grateful.

My subscription amount is: £

I would like to make a donation £ I wish to pay by cheque (made payable to The PSP Association)

Credit/Debit card

Mastercard Visa Maestro/Switch Card Number

(shaded boxes required for Maestro/Switch only)

Maestro/Switch Issue No Valid from / Expires /

For security reasons please write the last 3 uniquenumbers printed on the reverse of your card.

Cardholder’s name Cardholder’s billing address

Postcode

Signature Date

Membership application formPlease complete the name of the person holding the membership using BLOCK CAPITALS

Name of person who will hold the membershipI have or care for someone with PSP

Surname

Forename(s)

Title (Mr/Mrs/Ms/Mr & Mrs/other)

Address

Postcode

Telephone

Email

It would be useful to have a date of birth (optional)

Please indicate the membership you would like (full details of which are shown on opposite page)

Individual membership

Person living with PSP No fee

Carer, spouse or partner of person with PSP No fee

Individual membership £10 PA

Life membership £250

Overseas membership for people with PSP and carers/spouse/partner is free No fee

If taking up Carers’ membership please tell us the name of the person you are caring for

My relationship is (tick box):

Spouse Partner Other (please state)

I would like the PSP Association to reclaim the tax on this subscription and any donation I have made in the four

years prior to this year and any donations I may make in the future from the date of this declaration until I notify you otherwise. I am a UK taxpayer. I am paying at least as much in income and/or capital gains tax each year asThe PSP Association reclaims on my donations Date______________

I am already signed up to Gift Aid with The PSP Association I am not a UK taxpayer

:

:

Please return your completed form to: The PSP Association, FREEPOST RSLR-ZTGA-HHAU, Towcester, NN12 6BX

You can also join by telephone on 01327 322415

Membership includes:• A welcome pack.• Three editions a year of our membership magazine

PSP Matters, containing updates on care, and the latest research, as well as practical advice on living with PSP.

• Invitations to patients and carers events, information on fundraising events and initiatives - locally and nationally.

• Carers’ Information Pack (if you have PSP or are a Carer).

There are four individual membership options:

1. For people living with PSP there is no fee2. For carers, spouses and partners of people with PSP there is no fee3. Individual membership is £10.004. Life membership is £250.00

Overseas membership to people with PSP and carers/spouse/partner is free.

Join us today - become a memberHelp us work towards a world free of PSP

✂

PSP Matters Autumn 2011- issue 52

psp matters autumn

Documents

psp association

awareness of psp

aid of psp

psp research18

new support groups

research community

research strategy

research updates